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Dr Elizabeth Forsythe

Elizabeth Forsythe is a consultant in clinical genetics with a specialist interest in Bardet-Biedl syndrome, ciliopathies and therapies for rare genetic conditions.

Dr Roly Megaw

Roly Megaw is an academic ophthalmologist with a clinical and research interest in the inherited retinal dystrophies (IRDs), a group of untreatable, monogenic conditions that are the leading cause of visual loss in children and working adults. 

Mrs Fiona Copeland

Fiona is a patient advocate for Rare Diseases who was awarded a British Empire Medal for chairing the PCD Support Group and raising awareness of PCD in the 2021 New Year’s Honours.

Mrs Kerry Leeson-Beevers

Kerry has lived experience as her son is diagnosed with AS which is an ultra-rare and complex condition. She is a patient representative on the England Rare Diseases Framework Delivery Group and is co-applicant on various NIHR funded research studies.

Mrs Tonia Hymers

I am an operations manager with experience in team management, contract management, publications development and editing, bid writing, service and strategy development and events.